Friday, 15 April 2011


I'm Rachel I'm 13 and from Cambridge. So this blog is basically about living with M.E/CFS so I suppose I should explain what M.E/CFS is shouldn't I?!

What is M.e/CFS?:
ME is a recognised relapsing and remitting medical condition with many complex fluctuating symptoms. Its existence is confirmed in the January 2002 report by the Chief Medical Officer of England and Wales. The report states that ME is: a genuine illness and imposes a substantial burden on the health of the UK population" and is a quite common, very heterogeneous condition of adults and children that lacks specific disease markers but is clinically recognisable."
ME stands for Myalgic Encephalopathy (My-al-jik En-kefa-lop-athy)

The term Myalgic Encephalopathy indicates the pain in the muscles, neurological problems and general suffering that accompany this illness:

Myalgic: Greek origin meaning muscle
Encephalo: Greek origin meaning brain
Pathy: meaning suffering or sickness

There is no known cause of ME as yet, although in young people it most commonly follows persistent viral infection. It is often referred to as Chronic Fatigue Syndrome (CFS) or Post Viral Fatigue Syndrome (PVFS).

Sometimes ME is still referred to by an older version of the name: Myalgic Encephalomyelitis. However, this is technically incorrect because the term 'myelitis' means inflammation of the brain and there is no inflammation found in the brain of ME patients. This was discussed by the doctors involved in the Chief Medical Officer's steering group and they agreed that 'pathy' was a more correct definition.

What are the symptoms?:
There is no predictable pattern to ME/CFS. The profusion of symptoms can be confusing and alarming and symptoms can fluctuate greatly over short periods of time.

Fatigue: Utter exhaustion, often to the point of collapse, totally different from the normal tiredness healthy people experience. Fatigue levels fluctuate over the day and are different from patient to patient. Pallor of the skin may be evident when fatigue is worst. If standing, some patients may need to sit or lie down very quickly wherever they are. Many patients experience post-exertional malaise (the delayed onset of fatigue) after too much activity. Persistent fatigue must be present for a diagnosis to be made but is not always the worst symptom.

Pain: Anywhere in the body but particularly headaches and intense muscle and joint pain, especially in the lower limbs, which is usually difficult to relieve with standard painkillers. Skin sensations such as skin crawling and pins and needles may be felt.

Cognitive impairment: Poor short- and medium-term memory, mental confusion and mental fatigue; the brain seems to run out of steam. Difficulty concentrating, word-finding and thinking. Inability to plan. These symptoms together are commonly called 'brain fog'.

Other symptoms: Body temperature disturbance, dizziness, vertigo, postural hypotension, sensitivity to light and noise. Possibility of sleep disturbance, nausea, loss of appetite, gastrointestinal disturbance, mood swings, panic and anxiety, acquired sensitivity to food, medication, alcohol and chemicals.

What is M.E like?

I can't walk straight and my balance is dreadful.
It's like a giant hoover has come down out of the sky and sucked out all my energy.
My energy is used up so quickly, even on simple tasks like sitting up, or getting dressed.

On bad days it can be hard work just lifting a spoon to your mouth.
Words come out all wrong and you forget what you're saying in the middle of a sentence.
I can't concentrate on any kind of reading, writing, or watching television for more than ten minutes.

My legs ache continuously; the muscles twitch and jump. I start off walking quite well but soon my legs grow heavier until they can't straighten under my weight.
All my senses are hypersensitive. And noise is painful and bright lights hurt my eyes.
I sleep all day and am awake all night. I try to sleep, but the inside of my head just goes round and round.

Even on the hottest day I feel cold, especially my hands and feet. They tingle and sometimes I can't feel my fingers.

What do children and young people with M.E have to do to manage their illness?

The patient has to find his or her limitations. They try a very small activity for 10 or 15 minutes, then rest. In severe cases of M.E, 'activity' can mean simply sitting up in bed or having a short conversation.
I tried to push myself and do a lot more than I was really capable of. It was a natural reaction for me, but now I realise that it wasn't brave. If you do that, you end up feeling worse than when you started. I then learned to pace myself and tried to avoid the urge to complete a task in one sitting. I alternated small mental tasks with small physical ones because I soon learned that it was as important to rest my brain as it was my body.

I hope this has been useful and you now understand what M.E/CFS
Thank you for reading

Rachel xx

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